Wittmeier Kristy, Brown Cara, Diaz Francis, Pylypjuk Heidi, Restall Gayle, Anang Polina, Gerhold Kerstin
Children's Hospital Research Institute of Manitoba, Winnipeg, Manitoba, Canada.
Department of Pediatrics and Child Health, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada.
Can J Pain. 2023 Sep 1;7(1):2254358. doi: 10.1080/24740527.2023.2254358. eCollection 2023.
There is a recognized need to involve people with lived experience of chronic pain when developing chronic pain resources.
The aim of this study was to develop, implement, and evaluate a short-term youth council focused on eliciting youths' recommendations for key features of chronic pain informational resources.
In this mixed methods instrumental case study, demographic data were collected via Survey Monkey®. Select Patient-Reported Outcomes Measurement Information System® brief measures were used to provide context regarding pain impact within this group. Participants completed an initial interview, which informed youth council workshop delivery. Over two youth council workshops, participants reviewed select informational resources and identified key features of chronic pain resources. Participants evaluated their involvement experience during a second interview. Qualitative data were transcribed and analyzed using directed content analysis. Member-checking occurred during a third workshop, held virtually.
Seven youth self-identifying as girl/woman or demi-girl participated. The youth were satisfied with the youth council experience, highlighting the importance of meeting others, a relaxed environment, and participating in valuable work. A list of youth-identified key features for informational resources was created through the workshops, which includes considerations for audience groups, content, and presentation.
Participants' input into youth council development and meeting others with lived experience contributed to a safe and supportive involvement experience. Youth council involvement supported the development of preliminary recommendations for chronic pain informational resources.
在开发慢性疼痛相关资源时，人们认识到需要让有慢性疼痛亲身经历的人参与进来。
本研究的目的是建立、实施并评估一个短期青年委员会，该委员会专注于征集青少年对慢性疼痛信息资源关键特征的建议。
在这个混合方法的工具性案例研究中，通过Survey Monkey®收集人口统计学数据。使用患者报告结局测量信息系统®的简短量表来提供该群体疼痛影响的相关背景信息。参与者完成了一次初始访谈，这为青年委员会研讨会的开展提供了信息。在两次青年委员会研讨会上，参与者审查了选定的信息资源，并确定了慢性疼痛资源的关键特征。参与者在第二次访谈中评估了他们的参与体验。定性数据进行了转录，并使用定向内容分析法进行分析。在第三次虚拟研讨会上进行了成员核对。
七名自我认定为女孩/女性或半女孩的青少年参与其中。这些青少年对青年委员会的经历感到满意，强调了结识他人、轻松的环境以及参与有价值工作的重要性。通过研讨会创建了一份由青少年确定的信息资源关键特征清单，其中包括对受众群体、内容和呈现方式的考量。
参与者对青年委员会发展的投入以及与有亲身经历的其他人会面，促成了一种安全且支持性的参与体验。青年委员会的参与为慢性疼痛信息资源的初步建议的制定提供了支持。
